End of life care in dementia: An introduction

However, in the case of dementia, it can be difficult to predict when a person is nearing death. They may present with signs that suggest they are very close to death, but in fact can show these signs for many months or even years. Or they may seem near to death and then improve and live for many months longer.

In addition, a person with dementia may die from another medical condition, for example cancer or heart disease. They may also have infections and minor illnesses on top of these ongoing conditions. Having these other conditions and illnesses may mean the person is cared for, or ultimately dies, in a hospital or a facility that does not specialise in dementia care.

Joe died peacefully in his own bed. We were there at the end with Joe, his wife and children as he took his last breath. We felt privileged to have cared for him right to the end.

A care home staff member reflecting on the death of a resident.

For all these reasons, while knowledge about end-of-life care has increased greatly over the past ten years, particularly in areas such as cancer care, many people with dementia still do not receive good quality end-of-life care.

This feature looks at what is involved in good end-of-life care for people with dementia. Overall, good end-of-life care is generally not complicated, but simply just good person-centred care – that is, care that responds to the needs of the person.

So is dementia a terminal illness?

Dementia is not always recognised as a terminal illness or the actual cause of death, often because there may also be other health problems, such as cancer or heart disease, which may be the main health concern. Dementia is, however, a terminal illness.
The majority of care home residents will have some form of dementia and often have a combination of basic and complex health care needs. Typically, when a person with dementia moves into a care home they die within two years of admission, so care home staff can develop a lot of experience caring for people at the end of life.

Making decisions in a medical emergency

Often, acute illness occurs at night. In these situations, an on-call doctor may have to make a difficult decision about whether to admit the person to hospital. But typically they won’t know whether or not the person with dementia has asked to be cared for and made comfortable only (that is, to have palliative care), and whether or not the person has elected to have any active treatment, such as resuscitation or intravenous antibiotics. This can lead to the distressing and relatively common situation where a person with advanced dementia is transferred to the acute hospital where they then die in unfamiliar surroundings (see the feature ‘Care in the last days and hours of life’ in this section).

People with dementia need to be supported to make advance care plans to make clear their wishes in these circumstances. Care providers too need to make sure that they are prepared for situations like this, and do their best to ensure that they know, document and meet the person’s wishes. (See the feature on ‘Advance care planning’ in ‘Making decisions’ section.)

Managing symptoms

Most of the symptoms experienced by frail older people with dementia at the end of life, such as pain or swallowing difficulties, do not require specialist palliative intervention, but just good general care. They often experience symptoms similar to people with cancer, such as:

pain

pressure

sores

agitation

eating problems and loss of appetite

constipation

breathing difficulties

low mood.

If the person has started having more acute illnesses, such as chest or urine infections, this is often a sign that the person is nearing the end of their life. Typically, this results in an admission to the acute hospital, which may not always be appropriate, especially if the person is in the last few days or hours of life. Many care home residents and their families would want these infections to be treated in their preferred place of care, perhaps their own home or the care home. (See the feature on ‘Advance care planning’ in ‘Making decisions’ section.)

Communication across the whole care team

Many people have a role to play in end-of-life care – a GP, district nurses, care staff, speech and language therapists to name a few – so the network can be large. But one of the most critical aspects to good end-of-life care is making sure that each member of the care team communicates reliably with others in the team. Without good information-sharing, a person is less likely to receive the care they need.

In particular, often the care team can forget to make sure that family understands what is happening and are updated regularly. This can be distressing for the family at what is already a very difficult time.

Specialist end of life resources

Don’t forget to find out about what resources are available in your local area from specialist palliative and end of life care teams. These teams will provide support, care and advice to people with dementia who are dying and the care team working with them.

There are several resources that support the delivery of good end-of-life care:

The Gold Standards Framework

The GSF is a systematic but common-sense approach that provides health and social care professionals with a structure to help deliver good quality care at the end of life. It helps those working with people with dementia to identify those who are in the last years of their life, assess their needs, symptoms and preferences, and to plan care to meet these. This enables the person to live and die where they choose. GSF is designed to help the care team provide:

the right care at the right time for the right person

care that is person-centred and carer-centred

care that plans ahead rather than simply reacting in an emergency or critical situation

care closer to where the person with dementia wants to be cared for and to reduce unnecessary admissions to hospital

partnership working so that the person with dementia receives good care in all care settings.

One Chance to Get it Right

Whereas the GSF supports good quality end-of-life care in the last year or months of life, One Chance To Get It Right focuses on improving people’s experience of care in the last few days and hours of life. It sets out the approach to caring for dying people that health and care organisations and staff caring for dying people in England should adopt, whether a person is dying in hospital, hospice or their own home.

Priorities of Care for the Dying Person

Caring for people who are close to death demands compassion, kindness and a skilled application of knowledge. Priorities of Care for the Dying Person sets out the duties and responsibilities of health and care staff to:

Recognise: The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly. Always consider reversible causes, for example, infection, dehydration, hypercalcaemia.

Communicate: Sensitive communication takes place between staff and the dying person, and those identified as important to them.

Involve: The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

Support: The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

Plan & Do: An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

Downloads

All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:

Useful links Open

Care of dying adults in the last days of life
This December 2015 guideline from NICE (NG31) covers a range of issues, including communication and shared decision-making, as well as hydration and managing common symptoms, in the last two to three days of life.

Dementia and end of life planning
This information on the NHS Choices website presents information on care at home, hospice care and palliative care for people with dementia and includes a five-minute video on palliative care at home for people with dementia.

Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP has developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.

Time to talk?
This leaflet put out by the Dying Matters Coalition looks at how to start
conversations with people with dementia about end of life care, and it covers ‘What
to talk about’ and ‘What happens if you don’t talk’, and
‘When to talk’.

Dementia end of life care: special interest group (SIG)
A new network run by Dementia UK and Hospice UK provides an interactive forum for practitioners with an interest in dementia end of life care. The group meets regularly and summaries from the meetings can be downloaded from the Hospice UK website.